{"id":474257,"date":"2026-05-30T05:53:09","date_gmt":"2026-05-30T05:53:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/474257\/"},"modified":"2026-05-30T05:53:09","modified_gmt":"2026-05-30T05:53:09","slug":"emily-oreilly-my-brothers-hiv-seemed-under-control-so-why-did-he-die-the-irish-times","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/474257\/","title":{"rendered":"Emily O\u2019Reilly: My brother\u2019s HIV seemed under control. So why did he die? \u2013 The Irish Times"},"content":{"rendered":"

Shortly after 8pm on May 29th, 2023, my<\/a> brother Brian, aged 62, died at London<\/a>\u2019s Whittington Hospital. He had been admitted by ambulance late the previous night following a collapse at a nursing home.<\/p>\n

At 11.40 that morning \u2013 observing his frailty \u2013 a doctor who did not know him advised against resuscitation should his heart stop. <\/p>\n

\u201cWe like to have this conversation earlier rather than later,\u201d she wrote in her medical notes, \u201cand given his complex medical history, he is unlikely to benefit from CPR and [it] is more likely to cause more harm than good.\u201d <\/p>\n

At 7pm, with cannulas on each of Brian\u2019s hands infusing dextrose and sodium, a nurse reported: \u201cNo concerns at present.\u201d <\/p>\n

Less than an hour later my brother\u2019s heart stopped. By the time his stillness was noticed, he was no longer breathing. <\/p>\n

There was no resuscitation. <\/p>\n

\u201cOn review, indeed, no signs of life.\u201d<\/p>\n

His partner was contacted.<\/p>\n

\u201cTitle of conversation \u2013 condolences.\u201d<\/p>\n

\u201cMode of conversation \u2013 telephone.\u201d<\/p>\n

Brian\u2019s death certificate recorded the immediate causes of death; a pneumonia caused by food and liquid entering his lungs \u2013 and a \u201cpseudo\u201d internal obstruction.<\/p>\n

The underlying causes were: human immunodeficiency virus, the cancer Kaposi\u2019s sarcoma (KS) and severe frailty.<\/p>\n

By the time he died, Brian weighed just over eight stone, having lost four stone \u201cunintentionally\u201d in six months. <\/p>\n

He had cachexia, wasting syndrome, his clothes loose around his body.<\/p>\n

The russet lesions of KS \u2013 a cancer consigned in public memory to last-century deaths from Aids yet still recorded by the World Health Organisation as \u201cAids defining\u201d \u2013 were visible on his legs, arms and chest.<\/p>\n

Everything about this death \u2013 the virus, the cancer, the wasting \u2013 felt as though from another time.<\/p>\n

\"EmilyEmily O\u2019Reilly: ‘After his death, my conscious self split in two.’ Photo: Bryan O\u2019Brien\/The Irish Times <\/p>\n

Brian had died more than 40 years after the western Aids epidemic began, more than 30 since his HIV diagnosis, a quarter of a century since effective HIV treatment had emerged. <\/p>\n

Why then, at the end, did he look less like a survivor of the modern HIV era than a casualty of its first?<\/p>\n

After his death, my conscious self split in two. <\/p>\n

One part was a grieving sister, mourning the loss of a brother, friend, confidant, beloved of my children, his Christening my first conscious memory.<\/p>\n

\"EmilyEmily and Brian O’Reilly on the day of his Christening <\/p>\n

The other part was the curious professional \u2013 a former journalist, Ombudsman \u2013 wondering at the disconnect between the contemporary framing of HIV and my brother\u2019s final two years and death.<\/p>\n

His dying seemed impolite, offending against the narrative: that, with treatment, the crisis had passed, that people would live lives as long as anyone else\u2019s.<\/p>\n

But if that were true, how could someone whose HIV was well controlled by antiretroviral therapy die like this \u2013 in London \u2013 in 2023?<\/p>\n

How was it possible for someone to get KS on the very treatment that is meant to hold it in check? <\/p>\n

And if that cancer is \u2013 still \u2013 categorised as \u201cAids defining\u201d \u2013 what did that mean in his singular case?<\/p>\n

In a scant two years, Brian\u2019s body had unravelled, developing cardiac, renal and liver failure alongside electrolyte instability that caused blackouts. A sling supported a shoulder fractured and repaired after a fall. Nerve damage to a foot confined him to a wheelchair. Chemotherapy in late 2022 weakened him; his body still dealing with the aftermath of intestinal surgery six years earlier, albeit successful.<\/p>\n

I keep our final WhatsApp: \u2018You about?\u2019 he wrote, \u2018Yup,\u2019 I replied<\/p>\n

Two nights before he died, we spoke for the last time, about family, relationships, from his plans for a move to a new nursing home later that week, to a pint in a Kensington pub in a wheelchair gifted by a friend.<\/p>\n

I keep our final WhatsApp. <\/p>\n

\u201cYou about?\u201d he wrote. \u201cYup,\u201d I replied. <\/p>\n

Brian had emigrated to New York in 1982, aged 21, away from his family, from his architectural studies, away from an Ireland mired in a homophobia so normalised that the gap between the official criminalisation of gay male sex and the unofficial violence against gay males was at times paper thin.<\/p>\n

In September of that year, five teenage boys beat to death 31-year-old Declan Flynn with branches wrenched from the birch trees of Dublin\u2019s Fairview Park.<\/p>\n

One of his killers \u2013 aged 14 \u2013 described the act as \u201cqueer-bashing\u201d. <\/p>\n

\"BrianBrian O’Reilly pictured in his 20s. He emigrated to New York in 1982. In 1990 he tested positive for HIV <\/p>\n

The judge suspended their manslaughter convictions, commenting: \u201cOne thing that has come to my mind is that there is no element of correction that is required. All of you come from good homes and experienced care and affection.\u201d<\/p>\n

As Brian planned his New York life \u2013 arriving at a peak of sexual freedom for gay men \u2013 a new threat was quietly announcing itself.<\/p>\n

A June 1981 report from the Centres for Disease Control and Prevention described a rare lung infection, pneumocystis carinii pneumonia, in five gay men in Los Angeles. Two had died.<\/p>\n

It was the first official report of what later became known as Aids. By 1995, one gay man in nine in the US had been diagnosed with Aids; one in 15 had died.<\/p>\n

In 1990, Brian tested positive for HIV. Briefly returning to Ireland, he moved to London, remaining there with his partner for the rest of his life. <\/p>\n

[\u00a0Hundreds gather in Dublin to remember Declan Flynn 40 years after his deathOpens in new window<\/a>\u00a0]<\/p>\n

In 1997, the roll out of new antiretroviral drug regimens dramatically increased life expectancy. The terrors passed. He would live, but in a space that demanded vigilance, monitoring, blood checks, medication changes as side effects emerged \u2013 high cholesterol, anxiety, potential cardiac and kidney risks \u2013 15 different antiretroviral therapy regimens between 1997 and 2022.<\/p>\n

All of this \u2013 to me \u2013 was invisible. His chemical sentinels demanded attention, yet remained in the conversational shadows.<\/p>\n

By the turn of the century, the HIV\/Aids story was shifting. Online Aids memorials were less frequently updated; the remembered dead eternally stuck in the gay style subcultures of the decades they had died in.<\/p>\n

HIV was there just as diabetes was or any chronic disease. Fewer people remembered the epidemic, even fewer its iconic disease \u2013 KS.<\/p>\n

I trace the start of my brother\u2019s decline to Easter 2021. <\/p>\n

It came early that year. We met in London in late March. Walking down Euston Road, he was limping, his left foot dragging. En route to Sainsburys one day, he tripped. Passersby plucked him from the hedge he had tumbled into.<\/p>\n

By the following summer he required a leg brace, ultimately, a wheelchair. An abnormal heart rhythm emerged in May; an attempted surgical fix failed two months later. <\/p>\n

His chemical sentinels demanded attention, yet remained in the conversational shadows<\/p>\n

In September, his kidney function deteriorated.<\/p>\n

His sodium levels fluctuated. He would faint, have seizures, attend A&E departments for sodium infusions.<\/p>\n

Brian coped, using a spreadsheet to monitor test results, track appointments, forward emails, corral his siloed consultants. <\/p>\n

I hovered as he shared the latest, speculative, diagnoses of his doctors; spinal cancer, breast cancer, motor neuron disease. <\/p>\n

In March 2022, an older, more terrifying world returned. Lesions on his knee and ankle had concerned his GP, a biopsy to check for KS was planned. His HIV consultant said KS was \u201chighly unlikely\u201d. The markers of his immune defence were normal, his viral load undetectable. <\/p>\n

Days later, a biopsy confirmed the cancer.<\/p>\n

He had options. This form of KS might remain on the skin and not spread into organs. He could die with it, and not because of it.<\/p>\n

Brian did not want it, period. He craved chemotherapy, terrified of facial lesions. In a hospital day room one morning, he watched as people received intravenous chemotherapy.<\/p>\n

I envied them, he said. <\/p>\n

My brother was not a child of the 21st century with its optimistic HIV narrative, with Aids at least tamed \u2013 not even called Aids any more \u2013 but rather \u201cadvanced HIV\u201d and everyone expected to live long and healthy lives.<\/p>\n

Brian was a child of the 1980s western Aids epidemic, when tens of thousands of gay men died and the lesions of KS did more than signal illness. They marked you.<\/p>\n

Four rounds of chemotherapy later, bruised from another fall, his treatment was stopped. Some lesions had faded; fresh ones arose on his legs, arms and chest. <\/p>\n

The spring of 2023 brought more weight loss, more falls, a medication list so long, that in itself \u2013 \u201cpolypharmacy\u201d \u2013 carried the weight of a separate illness.<\/p>\n

I looked for answers to his death, to those final, brutal, two years, to the inability of myriad specialists to identify a unifying \u2018why\u2019 or to keep him alive<\/p>\n

A shoulder break required an operation and physiotherapy that he was too weak to endure.<\/p>\n

He took vitamins, painkillers. He carried from hospital to home and later to care home a plastic bag filled with liquid food supplements. Medical notes suggested that he swap strawberry flavour for chocolate. <\/p>\n

Brian had worked for a global corporation. In 2022, no longer able to do so, he lost his job and his health insurance, moving from private rooms, bespoke menus and \u2013 in one hospital \u2013 views of the playing fields of Harrow \u2013 to the chaos of overcrowded NHS wards and finally to a nursing home from where he was brought, on an early summer\u2019s night, to Whittington Hospital to die.<\/p>\n

Eight days after his death, the nursing home, in an email, attached its condolences to an unpaid bill.<\/p>\n

Following his funeral in London, my brother, sister and I \u2013 a cat\u2019s cradle of hands beneath the casket \u2013 placed his ashes in our parents\u2019 grave.<\/p>\n

I looked for answers to his death, to those final, brutal, two years, to the inability of myriad specialists to identify a unifying \u201cwhy\u201d or to keep him alive.<\/p>\n

I searched for a missed diagnosis, an overlooked infection, a hidden cancer that might explain the catastrophic failing of his body. <\/p>\n

[\u00a0Aoife was diagnosed with HIV in Australia in 2020: \u2018He was unknowingly positive. We had no idea\u2019Opens in new window<\/a>\u00a0]<\/p>\n

As administrator of his estate, I had access to his medical records.<\/p>\n

Thousands of pages \u2013 unredacted \u2013 landed in my inbox. Over months, I studied them, rabbit holes of detail charting the minutest of procedures; the raising of a bed rail, the administration of a single tablet, the subdivision of a daily calorie intake. <\/p>\n

Occasionally, one could sense someone standing back, observing this cascade of illnesses, marvelling at their profusion, musing about HIV, the possible spread of KS, inter-organ damage, undetected other cancers, one medication interfering with another, the notes littered with upside down question marks, the medical shorthand of perplexity.<\/p>\n

His emotional state was noted. \u201cPatient visibly anxious\u201d, \u201cfrightened\u201d. <\/p>\n

\"EmilyEmily O’Reilly pictured in her office in September 2013 as she published her final report before taking up the role of European Ombudsman at the European Parliament in Strasbourg. Photograph: Bryan O’Brien\/The Irish Times <\/p>\n

Obtaining his HIV clinic notes continued to prove difficult, the illness still carrying layers of privacy and protection and shame.<\/p>\n

I met his HIV consultant. He asked if a student could attend as he, the student, \u201chasn\u2019t done one of these before\u201d. <\/p>\n

The student \u2013 younger than my son \u2013 was already in the room, my dead brother and I now a teaching moment.<\/p>\n

A \u201cconstellation of medical problems\u201d had led to Brian\u2019s decline and death, the consultant said. His deterioration was very apparent, but it was \u201chard to label him as terminally unwell\u201d. <\/p>\n

The emergence of KS was an \u201cunexpected and very unusual scenario\u201d for someone undetectable with a good CD4 count \u2013 a key indicator of immune system health \u2013 for so long. <\/p>\n

The terms \u2018accelerated ageing\u2019 and \u2018accentuated ageing\u2019 recurred across the literature, with calls for the greater integration of the science of biological ageing with HIV care<\/p>\n

Listing Brian\u2019s illnesses, he said none were linked to HIV, concluding that while HIV and KS were \u201cmentioned\u201d on his death certificate, they had not been \u201cmajor players\u201d. <\/p>\n

I understood the clinical distinction; HIV did not directly cause Brian\u2019s cardiac, kidney and other system failures as once it had caused normally quiescent infections to run amok, yet the attempt to detach Brian\u2019s death from the virus he had lived with for 33 years, jarred.<\/p>\n

I turned to medical literature, using search terms that might give coherence to medical incoherence. What emerged was something less tidy, less clear cut, the possibility that there was no single explanation at all.<\/p>\n

Paper after paper described \u201cpremature frailty\u201d, \u201cmulti-system illness\u201d, \u201cwasting\u201d, \u201cpolypharmacy\u201d, the earlier onset of diseases associated with ageing despite effective HIV treatment.<\/p>\n

Brian ticked every box. <\/p>\n

His consultant had told me, \u201c\u2026 ageing in people who have had HIV for a long time is an emerging topic that we are still learning about\u201d.<\/p>\n

[\u00a0Irish rate of HIV diagnoses highest in western EuropeOpens in new window<\/a>\u00a0]<\/p>\n

A lot of people, it appeared, were doing so. In 2021, as Brian\u2019s illnesses began to gather, The Lancet medical journal \u2013 in the first of a series of papers on ageing with HIV \u2013 had noted that prolonged survival with HIV translates \u2013 even on antiretroviral therapy \u2013 into an \u201cincrease of non-Aids-defining illnesses associated with age\u201d.<\/p>\n

The terms \u201caccelerated ageing\u201d and \u201caccentuated ageing\u201d recurred across the literature, with calls for the greater integration of the science of biological ageing with HIV care.<\/p>\n

What had happened to Brian was hiding in plain sight; his biological clock appeared to have detached from his chronological age. <\/p>\n

The old epidemic had changed tempo but Brian\u2019s generation of people with HIV had had to age before science could see that, to see clinically what ageing with HIV looked like. <\/p>\n

It was one thing to examine cells under a microscope, another to see a hypothesis played out in a human being many years later.<\/p>\n

Brian\u2019s generation had lived through the uncontrolled first encounter with the virus, through successive generations of treatment, surviving into middle age many years after the epidemic\u2019s peak.<\/p>\n

The treatments extended life dramatically, but many early regimens carried toxicities that became fully visible only over time.<\/p>\n

[\u00a0Continued rise in HIV diagnoses after drop during pandemicOpens in new window<\/a>\u00a0]<\/p>\n

HIV had not produced the catastrophic immune collapse associated with the epidemic years, but decades of immune activation, illness and treatment perhaps exacted a slower, cumulative, price.<\/p>\n

The role of KS in Brian\u2019s death remains unresolved. It did not appear to be the aggressive KS of the epidemic years but nor did it appear to be the slower moving \u201cclassic\u201d KS. <\/p>\n

Nothing else had been found to explain the wasting that had consumed him.<\/p>\n

No one said, \u201cthis is what he needs to get better\u201d. <\/p>\n

Interventions were reactive, fragmented: sodium levels corrected, falls treated, scans ordered. Each intervention made individual sense, collectively they mirrored the dissonance of his decline.<\/p>\n

My brother has now been dead for three years. I have found no simple answer to the question I had asked then: how do you die like that when the dominant post-crisis consensus suggests that people on effective HIV treatment are no longer expected to die this way?<\/p>\n

What I found instead is that ageing with long-term HIV can look like this for some of the first western epidemic generation: not one catastrophic opportunistic infection, not the old Aids deaths of the 1980s and 1990s, but rather an accumulation of frailty, inflammation, malignancy, organ damage, medication, fear and exhaustion.<\/p>\n

My brother\u2019s story had not been drawn from an older playbook. It was not out of date, not an outlier, not drawn from an obsolete HIV past.<\/p>\n

It was, rather, recognisably contemporary.<\/p>\n

Emily O\u2019Reilly is a former European and Irish Ombudsman and journalist, currently serving as an Ambassador for the Open Government Partnership.<\/p>\n","protected":false},"excerpt":{"rendered":"Shortly after 8pm on May 29th, 2023, my brother Brian, aged 62, died at London\u2019s Whittington Hospital. He…\n","protected":false},"author":2,"featured_media":474258,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[204642,103,61,60,99,4320,976],"class_list":["post-474257","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-emily-o-reilly","tag-health","tag-ie","tag-ireland","tag-london","tag-new-york","tag-weekendreview"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/474257","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=474257"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/474257\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/474258"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=474257"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=474257"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=474257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}